Enough is Enough for This Spoonie

A spoonie is someone who lives with chronic illness and the accompanying fatigue.

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I sat down and did something maybe I should not have done. I added up the money I have spent on seeing various kinds of specialists over the past five years and realized I could have bought a new car like maybe a Kia Soul.

The results have been getting diagnosed with Celiacs and Fibromyalgia so far but those do not explain all of the symptoms I experience. There are only 2 Rheumatology clinics in my city. One is nearly impossible to get an appointment sooner than 3 months out and is the one who diagnosed me with Celiacs. The other I won’t go back to because he said, “at your age something would have shown up by now.” Statistically speaking about 30% of various autoimmune problems are diagnosed in people in their 50s and 60s.

So I decided to stop seeking help from Rheumatologists and just live with it all unless later in the year I go to the University of Nebraska Medical Center. But I doubt I will. It is that whole could have bought a new car thing with my van being 13 years old.

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I will deal with the flare ups which include the recurring rashes a Dermatologist did not know what they are and said go to a Rheumatologist. I will be glad to take naps to lessen fatigue. I will stop googling symptoms to see what they could mean. I am taking myself out of the Pinball Patient machine.

Enough is enough for this spoonie.

Jesus has given me the strength to carry on with life for over 25 years. I will trust him to do so with my remaining years in this life.

Thank you for reading. God Bless.

49 thoughts on “Enough is Enough for This Spoonie

  1. A spoonie’s life is never an easy one, however God does walk with you as well as my daughter who is on a difficult path. May our Lord gives you the strength, a little less pain as you continue to do his will.
    Blessings

  2. My Dear Matt,

    -Chronic illness sucks.
    -Sometimes people don’t understand that when you have a flair-up, plans have to be cancelled
    -There are those who think it’s all in your head.

    BUT

    -God knows your suffering & is there to bring you comfort & give you strength.
    -Being open about your issues in your blog can be a HUGE help to others who are also misunderstood.
    -I for one, am in your corner as a prayer partner & friend.

    May God bless you greatly as you continue to serve Him

    Barb

    1. I agree with you Barbara, my daughter who has lupus and many other diseases has a you tube channel and a page on face book called Chronically Hopefully where she shares her journey with others. There are many people who are in the same kind of journey and by sharing your experience and your faith can help someone else

  3. Your expression of feeling like a pinball machine in our health care system brings me sadness. My wife has experienced some of the same as she deals with chronic pain. Matt, you are in my thoughts and prayers.

  4. My mom is over the doctors too. They take lots of money but rarely solve the problems. Hope things work out for you big brother.

    1. We need to turn it all over to Christ, my prayer for my daughter has been, Lord open the eyes of the doctors to see what you do, and finally what she has been dealing with for the last two years on top of everything else is a tumor in her adrenal gland. She will have the tumor and gland remove in July (they need to get her more stable) it looks like it is cancer, however we are all at peace for answers and knowing God is walking with us in this journey. She has lupus, EDS, mast cell, P-O-T-S, and more, let us all encourage each other in our journey

      1. So sorry to hear this Eileen. Your faith is so strong. Turning it over to Christ is the best thing we can do. My mom has complications from hip surgery, rheumatoid arthritis, and some other things. I’m thankful God answered your prayers and gave wisdom to the doctors to know what was wrong with your daughter.

      2. And so am I Dawn, my daughter has a long road ahead but her faith is strong, she knows that Christ walks with her. My prayers are with your mom.

  5. I most definitely relate. It’s such a frustrating, expensive ordeal bouncing one doctor to another looking for a clue. My brother is actually the one who did most of the research that landed us on EDS. Few doctors we’ve encountered have more than a tidbit of knowledge yet the issues it can cause are so widespread. Prayers to you, fellow Spoonie. May God grant you relief and answers.

  6. Yes, you know that Andrew and I understand this pinball machine. πŸ˜• I still occasionally read a health thing here or there in hopes that there is something new that I can try, but doing that can drive you batty. Trying new medication was not a good thing for me. That just ended up causing me more problems, so mostly I’m trying to learn to lean on the Lord and be content in all circumstances. That’s not easy some days, but God is faithful. I just have to stay focused on this and Him.

  7. Yes. Yes. and I agree. I have also removed myself from the patient pinball machine. That is about the most accurate description of the process I’ve heard in a long while! Trust God. He created our bodies. He knows us. God bless you.

  8. Continuing to place your trust in Him is where you will receive the victory. You are ministering to others when you share your journey and how He has been faithful even through illness. You are an inspiration and I see Jesus in your stories.

  9. Sending you light, love and prayers. I have great medical insurance but I too could have bought a little car with the money I’ve spent over the past few years. Its absolutely crazy. I feel you. πŸ€—

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